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The Hub has M.E. and I had intended to write about it and him but – somewhat ironically – after the day I’ve had, I’m too tired to blog.

Instead, I will re-post last year’s article (which is actually a re-post from the year before, but nothing has changed so I don’t feel guilty), and ask you to spare a thought for people like the Hub, facing prejudice and disdain from those who believe he is too lazy to work, on his best days; and too lazy to get up, on his worst.

Today is International CFS/ME Day.

That’s a mouthful so, in layman’s terms: millions of people across the world suffer unexplained fatigue, excruciating pain, the stigma of being called ‘lazy’, and are generally considered too idle to work.

Please consider me sticking two fingers up at those who say my husband who, before he became ill, ran his own business, travelled all over sub-Saharan Africa, trained under-14s at football, was a qualified referee who covered as many as five games every Saturday, set up and ran the official MCFC Supporters Club of South Africa and occasionally came home to remind himself of what his family looked like, is lazy and too idle to work. I don’t buy it.

I don’t know how much you know about ME but here’s a bit of info to get you started:

It has many names, including:

Yuppie Flu

Myalgic Encephalomyelitis

Chronic Fatigue Syndrome

Post-Viral Fatigue Syndrome

Fibromyalgia is similar but not exactly the same, though I can’t really tell you the difference; and I don’t think it matters to those who suffer from these dreadful and debilitating conditions.

It robs you of a meaningful life.

You will spend your time in a haze of pain, exhaustion and prejudice – because ‘you don’t look sick’. Someone once said to the Hub, ‘I wish I had it; I could do with six months off work.’ Now that person does have it, and it’s been a lot longer than six months. I don’t gloat over that because I wish nobody had it.

Symptoms vary from person to person.

That’s one of the reasons it’s so difficult to diagnose and treat. It doesn’t help that many in the medical profession don’t believe it exists. It took two years before the Hub was taken seriously by a doctor. He would be in bed for weeks. When he could drag himself to the doctor’s he would invariably be told to ‘take two paracetamol and go to bed.’ One doctor said he needed a psychiatrist.

When a doctor finally did take him seriously, it took many more months for him to be officially diagnosed: the only way to do it was to rule out anything else. He has had every kind of scan, blood test, whatever, available on the NHS. They were thorough, but what a waste of money.

Then, once diagnosed, you are left to get on with it because there is no cure.

A few of the symptoms:

severe, debilitating and disabling fatigue

poor concentration

brain fog

poor memory

useless sleep i.e. you never feel refreshed

muscle pain

headaches

migraines

joint pain and inflammation

swollen glands

sore throat

hot sweats

cold sweats

noise sensitivity

light sensitivity

anxiety

insomnia

too much sleep with no benefit

short-lived paralysis

numbness

twitching muscles

tinnitus

blackouts

depression

feeling spaced out

mood swings, particularly bad moods

nausea

IBS

lack of temperature control

allergies

chest pain

sinusitis

This is not a complete list.

Not pleasant, is it?

So, if you know someone with CFS/ME or Fibromyalgia, please don’t take it personally when they cancel a long-standing date or seem fidgety and uncomfortable when you visit. They simply don’t have the required energy. If they live alone, offer to help with their shopping, take them to appointments, or anything else they might need.

Be nice. Don’t judge until you’ve walked a mile in their shoes – you’ll have to do it, because they can’t walk a mile in any shoes.

And be careful yourself: slow down; don’t feel the need to do everything. Believe me, M.E. can happen to anyone.

*

An apology: I had intended to write a good-humoured piece that would send you on your way with a smile and hopefully leave you thinking a little about this illness.

I couldn’t do it. The sufferer has all the suffering, but their loved ones have to stand by, helpless, watching as their lives go on hold. I hate it.

The saddest thing he ever said to me was, ‘I never got to play football with my own children.’

Answer: When it is time for a flu jab.

“The One Ring” from J.R.R. Tolkien’s works (Photo credit: Wikipedia) If only medical reception phones worked like this

Sigh.

The NHS gives free flu jabs every year for those with certain conditions, including pregnancy and anything neurological. I freely admit the Hub is not pregnant, but he has M.E. which is most definitely a neurological condition.

Unless I try to book his jab, that is. Every year we go through the same much ado about something important:

Receptionist: Hello, this is your medical centre speaking. How may I obstruct you?

Tilly Bud: Hello Beautiful Lady, Keeper of the Appointment Book. Please may I book a flu jab for my husband if it’s not too much trouble for your Kindly Beautifulness?

Reception[Barks]: Name?

Tilly Polite: The Hub.

Loooooooooong pause.

Recepti[Grunts]: Of number street name?

Tilly Politer: That’s right, O Clever Hoarder of the Surgery Pens.

Recep[Indignant]: He’s not eligible.

Tilly Desperate [Sigh – inaudible to avoid provoking the beast]: We have this discussion every year, dear Starched Muffin of the GPs. He has M.E., which is a neurological condition. If you don’t mind checking his record, Lovely Tracker of the Public Toilet Toilet Paper, you will see that he has had the jab every year.

Rec [Reluctant but Dutiful]: I’ll have to speak to the nurse and get back to you. Wait by the phone. Do not take toilet breaks. Do not pass/go. Let your bladder burst and soil your seat before leaving the designated hearing-of-the-ringing-telephone area. I will make one call only. No reply from you, and I will disappear from the face of the earth with any possible appointment that may or may not be offered or not offered to your alleged eligible spouse. Do you understand these conditions as I have explained them to you? DO YOU?

Tilly Terrified: Yes, O She Who Wields All The Power. Thank you for your great mercy to this humble supplicant.

Today is M.E. Awareness Day

I wrote this for last year’s M.E. Awareness Day. Nothing has changed, so I decided to re-post it as I wrote it.

Today is International CFS/ME and Fibromyalgia Awareness Day.

That’s a mouthful so, in layman’s terms: millions of people across the world suffer unexplained fatigue, excruciating pain, the stigma of being called ‘lazy bones’, and are generally considered too idle to work.

Please consider me sticking two fingers up at those who say my husband who, before he became ill, ran his own business, travelled all over sub-Saharan Africa, trained under-14s at football, was a qualified referee who covered as many as five games every Saturday, set up and ran the official MCFC Supporters Club of South Africa and occasionally came home to remind himself of what his family looked like, is lazy and too idle to work. I don’t buy it.

I don’t know how much you know about ME but here’s a bit of info to get you started:

It has many names, including:

Yuppie Flu

Myalgic Encephalomyelitis

Chronic Fatigue Syndrome

Post-Viral Fatigue Syndrome

Fibromyalgia is similar but not exactly the same, though I can’t really tell you the difference; and I don’t think it matters to those who suffer from these dreadful and debilitating conditions.

It robs you of a meaningful life.

You will spend your time in a haze of pain, exhaustion and prejudice – because ‘you don’t look sick’. Someone once said to the Hub, ‘I wish I had it; I could do with six months off work.’ Now that person does have it, and it’s been a lot longer than six months. I don’t gloat over that because I wish nobody had it.

Symptoms vary from person to person.

That’s one of the reasons it’s so difficult to diagnose and treat. It doesn’t help that many in the medical profession don’t believe it exists. It took two years before the Hub was taken seriously by a doctor. He would be in bed for weeks. When he could drag himself to the doctor’s he would invariably be told to ‘take two paracetamol and go to bed.’ One doctor said he needed a psychiatrist.

When a doctor finally did take him seriously, it took another six months or more to be officially diagnosed: the only way to do it was to rule out anything else. He has had every kind of scan, blood test, whatever, available on the NHS. They were thorough, but what a waste of money.

Then, once diagnosed, you are left to get on with it because there is no cure.

A few of the symptoms:

severe, debilitating and disabling fatigue

poor concentration

brain fog

poor memory

useless sleep i.e. you never feel refreshed

muscle pain

headaches

migraines

joint pain and inflammation

swollen glands

sore throat

hot sweats

cold sweats

noise sensitivity

light sensitivity

anxiety

insomnia

too much sleep with no benefit

short-lived paralysis

numbness

twitching muscles

tinnitus

blackouts

depression

feeling spaced out

mood swings, particularly bad moods

nausea

IBS

lack of temperature control

allergies

chest pain

This is not a complete list.

Not pleasant, is it?

So, if you know someone with CFS/ME or Fibromyalgia, please don’t take it personally when they cancel a long-standing date or seem fidgety and uncomfortable when you visit. They simply don’t have the required energy. If they live alone, offer to help with their shopping or anything else they might need.

Be nice. Don’t judge until you’ve walked a mile in their shoes – you’ll have to do it, because they can’t walk a mile in any shoes.

And be careful: slow down; don’t feel the need to do everything. Believe me, it can happen to anyone.

*

An apology: I had intended to write a good-humoured piece that would send you on your way with a smile and hopefully leave you thinking a little about this illness.

I couldn’t do it. The sufferer has all the suffering, but their loved ones have to stand by, helpless, watching as their lives go on hold. I hate it.

The saddest thing he ever said to me was, ‘I never got to play football with my own children.’

On this very day, Fifteenth August, 1996 – fifteen years ago – I arrived back in the UK after fourteen years in South Africa, with two children, two prams, eleven trunks full of stuff I wouldn’t see for eight months, six suitcases, and the expectation that the Hub would follow me and we would have no trouble finding jobs, a home and a happy new life.

The Hub followed me, so that was something.

We found ourselves homeless and jobless; he got sick with CFS/ME; our money ran out; and three of our parents died within eighteen months of each other. Did you ever stand in a hurricane and wonder how you got there? Me neither, but I bet I know how it feels.

Work for a better future, definitely; but don’t expect it. Expectations are a waste of time. Dreaming is a waste of time. Live in the now, and make the most of it; be grateful for what you have – a happy marriage; great kids; much laughter; a roof over your head and food, however burnt, on the table.

I’d rather look back on laughter and good times than hope for it to come, because there are no guarantees.

Like this:

That’s a mouthful so, in layman’s terms: millions of people across the world suffer unexplained fatigue, excruciating pain, the stigma of being called ‘lazy bones’, and are generally considered too idle to work.

Please consider me sticking two fingers up at those who say my husband who, before he became ill, ran his own business, travelled all over sub-Saharan Africa, trained under-14s at football, was a qualified referee who covered as many as five games every Saturday, set up and ran the official MCFC Supporters Club of South Africa and occasionally came home to remind himself of what his family looked like, is lazy and too idle to work. I don’t buy it.

I don’t know how much you know about ME but here’s a bit of info to get you started:

It has many names, including:

Yuppie Flu

Myalgic Encephalomyelitis

Chronic Fatigue Syndrome

Post-Viral Fatigue Syndrome

Fibromyalgia is similar but not exactly the same, though I can’t really tell you the difference; and I don’t think it matters to those who suffer from these dreadful and debilitating conditions.

It robs you of a meaningful life.

You will spend your time in a haze of pain, exhaustion and prejudice – because ‘you don’t look sick’. Someone once said to the Hub, ‘I wish I had it; I could do with six months off work.’ Now that person does have it, and it’s been a lot longer than six months. I don’t gloat over that because I wish nobody had it.

Symptoms vary from person to person.

That’s one of the reasons it’s so difficult to diagnose and treat. It doesn’t help that many in the medical profession don’t believe it exists. It took two years before the Hub was taken seriously by a doctor. He would be in bed for weeks. When he could drag himself to the doctor’s he would invariably be told to ‘take two paracetamol and go to bed.’ One doctor said he needed a psychiatrist.

When a doctor finally did take him seriously, it took another six months or more to be officially diagnosed: the only way to do it was to rule out anything else. He has had every kind of scan, blood test, whatever, available on the NHS. They were thorough, but what a waste of money.

Then, once diagnosed, you are left to get on with it because there is no cure.

A few of the symptoms:

severe, debilitating and disabling fatigue

poor concentration

brain fog

poor memory

useless sleep i.e. you never feel refreshed

muscle pain

headaches

migraines

joint pain and inflammation

swollen glands

sore throat

hot sweats

cold sweats

noise sensitivity

light sensitivity

anxiety

insomnia

too much sleep with no benefit

short-lived paralysis

numbness

twitching muscles

tinnitus

blackouts

depression

feeling spaced out

mood swings, particularly bad moods

nausea

IBS

lack of temperature control

allergies

chest pain

This is not a complete list.

Not pleasant, is it?

So, if you know someone with CFS/ME or Fibromyalgia, please don’t take it personally when they cancel a long-standing date or seem fidgety and uncomfortable when you visit. They simply don’t have the required energy. If they live alone, offer to help with their shopping or anything else they might need.

Be nice. Don’t judge until you’ve walked a mile in their shoes – you’ll have to do it, because they can’t walk a mile in any shoes.

And be careful, slow down, don’t feel the need to do everything. Believe me, it can happen to anyone.

*

An apology: I had intended to write a good-humoured piece that would send you on your way with a smile and hopefully leave you thinking a little about this illness.

I couldn’t do it. The sufferer has all the suffering, but their loved ones have to stand by, helpless, watching as their lives go on hold. I hate it.

The saddest thing he ever said to me was, ‘I never got to play football with my own children.’

This Is Me:

I am a little fat. I like food; what can I say? I have dull hair: mousey. I don’t wear much make-up and have no need of a dressing table. If I look like a bag lady, I chose my own clothes. If I look nice, the Hub picked them for me. Despite all this, I am a little vain. This photograph is from 2003. I had to go back that far to find one of me that I liked. But I don’t really care: my husband still thinks I’m beautiful and if he doesn’t, he loves me enough to lie about it. I’m lucky. I have two boys. They never lie to me. Still, you can't have everything.

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